Transitioning from a Regular Life to one with an Invisible Illness

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I haven’t been blogging for the past month, even though I enjoy writing more than I ever realized. My career, when I was employed, was working with computers and financial statements. Numbers are cut and dry and programming and designing databases, require a logical forward thinking approach. I had a successful career and this vocation seemed to suit the way my mind worked, or so I thought.

Now after being out of work and on disability 4 years ago to the day, I realize that even if I were to return to work, what I did for 28 years is not what I would choose to do now. My nephew is starting law school in the fall and is so passionate and excited about being a lawyer. I was never excited or passionate about being a financial analyst. It was just the logical thing to do after I received my MBA in finance. I didn’t even interview for any other types of jobs and now I wonder why. Why was I so focused on the analytic career path? And once I landed a job, the career seemed to form itself and then an opportunity opened up for me to start designing databases and I started doing that and enjoyed it.

I was very content in my career. I had 3 jobs over a 28 year career and 1 of those jobs was only for 11 months, so basically I spent 27 years with 2 companies. I must have been content otherwise I would have made different choices. I felt challenged, loved my work family and was very nicely compensated. Maybe that’s why I didn’t even think of doing something else. Most people have to reinvent themselves when they are challenged to do so, just as I have been since I became ill.

Writing has been a very different kind of enjoyment. Writing is personal, writing is subjective, writing is relaxing and writing is solitude. So why haven’t I been writing lately. I’m really not sure. I know I’ve been in my own head much of the time over the past month, trying to figure out ways to learn new things, meet new people and start enjoying life as I have to live it.

There are many paths people can choose when faced with a difficult life situation and I know I have handled mine with grace and dignity. No one can take that away from me. Maybe now it’s time to try and add in a little fun too!

This past weekend, was Yom Kippur, which is a solemn, reflective day to all Jewish people. Everyone thinks back over the past year and reflects on things that have happened, people that have passed and the deeds they have done.

On this holiday, it is believed, everyone’s fate is sealed for the next year. We atone for our sins today and tomorrow we start the new year with a clean slate. It’s a new beginning, with new possibilities for us all. In the spirit of the holiday, I have forgiven someone close to me who has hurt me tremendously, on several occasions.

I have been carrying around this hurt and annoyance and it was weighing me down. I decided that forgivenss was the kindest gift I could give myself to lift my spirit and I also felt it was a gift to the person I was forgiving. The person was very appreciative and apologized for the hurt and said that for me to forgive them, really shows that I am a special and understanding person.

It felt good to forgive someone, really forgive someone for something big. We are always forgiving people for running 10 minutes late or for misunderstanding something we said or forgetting to wish us “Good Luck” on an important occasion. These are little things, that in the scheme of life are unimportant. But I felt like it was a cleansing to forgive on a greater scale. Forgiveness brought me peace of mind. So for now, I have let go of the deeply held negative feelings I had towards this person, but time will tell if positive ones will replace these newly released negative ones.

Forgiveness does not mean that I am forgetting what was done, nor does it mean I’m excusing the offenses. It means that I am no longer holding on to this negativity and that I am free to move forward into the new year with a truly clean slate.

One night, after I finished eating dinner, I was bored and lonely and decided to call my boyfriend. We had been going out over a year, but during this time period I went from being a healthy independent career woman to someone with an invisible illness that had sucked the life and energy out of me. My relationship was strained as a result of becoming sick, as my boyfriend was uncomfortable being around old and sick people. I knew this before I became ill, but at that time it really wasn’t an issue.

It was a Wednesday night and usually we tried to see each other once during the week and then we spent the weekend together at his house. I was isolated living in NYC with my illness and he really was my lifeline. He’d pick me up on Fridays and drop me back home after the weekend, as at this point I was working from home, trying to sort out my health situation.

We had settled into a routine, although neither one of us was all that happy with our situation at this moment. He wanted more from me and I really had no more to give. I was like a battery on it’s last charge, puttering a little, but not completely dead. We had bickered a lot during the previous weekend because he didn’t want me to go home on Sunday and I said that I have no more to give, I’m completely exhausted and bone tired. If you need more, then you probably should start dating. He had said much worse to me and in a tone, that I became all too familiar with.

So on this Wednesday night, as I picked up the phone to speak with him, I wanted to smooth things out and figure out a way to avoid having the same situation occur the next weekend. But to my surprise, when I dialed his cell number, I heard him pick up and I said, “Hello”, but he wasn’t on the other end of the phone. Instead, what did I hear… I heard him talking to another girl, yes he was on a blind date, with someone for the first time.

At first I couldn’t believe what I heard, I was in disbelief. I didn’t know if I was more shocked that he was on a date, or that somehow the Universe was letting me know he was on the date and letting me listen in. I heard all about her, that she was a widow, with 2 grown kids and that her parents recently died.

I heard him suggest his favorite Italian entree and I immediately knew what restaurant he had choosen. We had been there many times together and I was picturing him sitting there with this woman. I heard him describe his situation, his children, his ex wife, his job and I felt like an intruder, yet I just couldn’t hang up the phone. I was in shock. How could he find someone to date in 2 quick days. Was he dating all along, since I became ill? Would I ever know the truth or be able to trust him again completely?

I feel that you should never ask a question that you won’t believe the answer too. So my mind was racing, was I going to ask him about this date?, was I going to pretend I didn’t know? or was he going to own up and tell me that he went on a date?

At this point, 2 hours had probably gone by and I had my headphones on. Yes, I probably should have hung up, but I couldn’t. The dinner was coming to an end and he paid the bill and they exchanged pleasantries outside the restaurant. Was he going to kiss her? Well he didn’t, instead the conversation switched and they started talking about cell phones. And what does he do, he reached into his pocket to show her his new cell phone and he sees that he’s connected to me on the phone.. OMG, I panicked and quickly hung up.

Now thinking back while writing this post, I’m laughing and have a big smile on my face, but at the time I wasn’t laughing or smiling. I knew he would start calling me when he was alone and I really didn’t know if I was prepared to speak to him right now. Sure enough 15 minutes later, the phone starts ringing and I don’t pick up. His personality, is such, that he won’t stop calling until I answer, he had displayed this behavior before, so I gave in and gave it to him!! We had an argument and then I hung up the phone and tried to sleep, but I didn’t sleep.

I couldn’t shut my mind off. I was hurt, very hurt, that 2 days after I told him to start dating if he needed more, he did. Really what hurt me the most, is that I realized he must have been planning on dating way before the past weekend when we bickered a lot and he had this girl waiting in the wings.

The next day, he showed up at my door and apologized profusely, over and over again. There was no connection between them, he doesn’t want to see her again and he wants to be with me, even though I’m ill. It took me a while to get over the hurt, but I did forgive him and we did give it another try.

What happened that night, has always stayed with me, as one of the funnier situations that have occurred in my “off the wall” dating life. I have many of these stories, but this one is close to the top of that list. Maybe the one that’s at the top is when I was on a blind date myself, after the meal, I had to go to the rest room and when I came back to the table, my date was gone. He left the restaurant. Unfortunately (or maybe fortunately), I don’t remember what we talked about, or else I could have used that story for my post!

I grew up on a typical street in the 1960s in Brooklyn, NY. I lived in the same 2 bedroom house for my entire childhood until I left for college. The small, but uncluttered house was home to my parents, my little sister and myself. Once you walked up the 7 brick stairs, you immediately stepped into an eat in kitchen with yellow, orange and black plaid wall paper. There were 4 vinyl brown swivel kitchen chairs, surrounding a round walnut table. Underneath the table, was our toy apricot poodle, who waited patiently there so that she could get fed scraps of meals from my father, as he had a soft spot for this dog.

Next to our kitchen was the living room, with green shag carpet and a green plush velvet couch, covered in plastic. There were 2 high back velvet flowered print chairs across from the couch and in between there was an oblong marble table. The piano, which I played (but not very well), was on the far end of the living room, flanked by 2 candelabras. Above the piano was a beautiful oil painting, done by my favorite uncle, who was a Canadian Artist. The sheer white curtains, barely shielded the room from the intense sunlight, that would stream in and discolor the carpet and the couch. The view was onto one of the most pleasant streets any child could hope to grow up on.

The pick and black tiled bathroom was an eyesore, with black and white square floor tiles and pink fixtures. One bathroom, 4 people. Imagine that! We never locked any doors in the house. To this day, I still don’t see the point of it. Knocking was key. The pink and black stall shower when it wasn’t being used, stored the laundry basket and portable clothes dryer, which was used during the winter, when the weather was just too cold to hang our wet laundry outside.

The 2 bedrooms were a little further down a rectangular hallway. My room, was shared with my sister, who was quite a bit younger than me. Our blue paneled walls, surrounded red shag carpeting. My side was the right. Her’s the left. The fake wood wall shelves that hung above our small desk were filled with little blue smurfs. Hundreds of smurfs. My parents bedroom had green painted walls and a light shag carpet. The big room looked empty, as there wasn’t much furniture, until later years when they purchased a dark wood, used bedroom set from a neighbor that was moving.

Most of our time was spent in the kitchen. Funny to think that we survived without cell phones or computers. We actually talked to each other during dinner. We had dinners together almost every night.

After dinner, we would sit on our porch and so would most of the neighbors with their children. Many of these children, I’m pleased to say are still in my life, some more than others, but the contact with many has kept up over the years. The block was an extended family, as I didn’t have many close blood relatives. We would be playing hit the penny or stoop ball or drawing hopscotch boards on the sidewalk, only to be washed away by the rain.

The house was filled with love and the block was filled with real lifelong friends. That’s my most favorite memory.

Shortly before this course started, I posted a blog about 4 incredible women that I have met in the years since I’ve been ill, but I don’t want to talk about them today. Today I want to describe a man that has touched my heart and my life in ways that no one else has and probably never will. He isn’t my boyfriend or my husband or my partner, but he is my truest friend that I could ever wish for.

I met this man close to 20 years ago when we both worked for the same company and we have both changed a lot since then. I remember being intimidated by his stature at first, because he was an ex navy officier, who stood up straight, walked with a steady and deliberate gait (even in his cowboy boots) and had the biggest belt buckle I have ever seen. His thinning hair was covered by a 10 gallon cowboy hat and his silver trimmed glasses highlighted his kind eyes. Beneath all of these clothes was a man who exuded positivity, warmth and love.

When he walks into a room, he commands respect, but not in a snobbish, pretentious way. You just sense that this man has something important to say and that being around him will make you feel good. He speaks in a calm and gentle tone and in all the years we’ve been friends, maybe he’s raised his voice once. When he speaks to you, you believe in him and in what he has to say.

He is a protector of people and I have been protected by him in many ways, both on the job and in my personal life. Since I’ve been ill, he has come to my rescue on so many occasions that it’s hard to recall them all, but he was the one that took me to my disability hearings so that I wouldn’t have to go through it alone. When I had to stop working and go on disability, he bought me an ipad, so that I could keep myself occupied and during the first holiday season that I was sick, he came and picked me up and drove me around NYC so that I could see the holiday decorations. When I had to move because of my illness, he handled the movers and made sure my apartment was empty and clean. He makes me feel safe whenever I am near him and he doesn’t even have to do anything but be himself.

But he doesn’t only protect his loved ones, he was the last man out on our floor when our office buildings were evacuated on 9/11. He made sure everyone else got to safety before he left the building and then he made sure to secure our computer and data systems, so that our company would be protected from downtime and data loss.

His approach to life, when I first met him was very foreign and strange to me, but as time went on, I began to start to see life as he did. He was an example of the “law of positive attraction” and he taught me to ask the universe for things and to change my thought process.

Although I am still working on this, as it doesn’t seem to come easily to me, to him, it’s second nature and there is no other way. He never seems to worry about little things, such as checking the bus or train schedule. He believes whenever he gets to the station, there will be a train waiting for him. He never worries about finding parking spots because they always open up when he drives on a block. He never worries about how much things cost because he believes everything will even out in the end. He is generous to a fault, to the people that matter to him and I am lucky enough to be included in that group.

This man is one of a kind, and I thank my lucky stars ever night that he walked into my life that day. When he greets you, he encompasses your body with a big warm bear hug or when he calls you on the phone and says “Morning” in his southern drawl, you know things will always be alright as long as you have him on your side and in your corner.

I was brought up to respect my elders and to listen to what they told me. I always looked at doctors with awe and listened intently to anything they would tell me and to always follow their directions. But lately, I am realizing that they too are just people, doing a job. Unfortunately, they are not fully invested in helping me get well. I am just another appointment on their calendar to get through. Heck, they don’t even show up on time for 90% of the appointments.

As I sat waiting in a doctor’s office yesterday afternoon, I had plenty of time to think. The appointment was at 1:15 and I was seen by the doctor at 3:45. The doctor is a genuinely nice man, highly respected in his field and his staff is exceedingly friendly (which is a big plus), but I still had to wait over 2 hours.

I will continue to see this doctor, as I value his advice and he is very respectful and courteous and doesn’t rush you during the exam (which is why you have to wait so long), but their are other doctors that I am currently seeing that I am seriously considering severing the relationship with.

I recently read an article about the relationship with your doctor and it stated “With a good doctor, you always leave the office feeling that they care about you.” I can’t say that is true in most of my experiences. I guess I’m not alone in feeling like this because the article also states that 2/3 of patients worldwide say that they are dissatisfied with their doctors, but many stick with them anyway because they assume all doctors will treat them the same way. The other major reason we stick with a doctor is because we are worried about offending them or we are just so overwhelmed by the idea of finding someone new and starting all over again.

I am guilty of these 3 reasons of sticking with doctors, long after I know I should move on. Recently, I had a test done at a lab and sent copies of the results to 2 different doctors (Dr. E and Dr. G).

Dr E. called me back within a week to discuss my results and a plan of action to help me improve the situation. It involves starting a new medicine, with major possible side effects. Dr. E spent a substantial amount of time on the phone with me answering my questions and then gave me her email address and said if I have any side effects or any additional concerns, just drop her an email. I have always loved this doctor and her handling of my current situation is just another reason why I am glad I did change doctors, because the previous specialist I was seeing was so rude and dismissive to me, that I left the office in tears (that’s the first and last time I hope that happens). But even after I left the office in tears, I told myself that maybe she’s having a bad day and I should give her another chance. I did use her one more time and while she wasn’t as rude, I just didn’t like the experience in her office, even with her help. They weren’t understanding of my needs and I promised myself I would look for another doctor.

Getting back to my current results, Dr. G’s office called me back two weeks after the test was done and the assistant requested that I make an appointment to see the doctor to discuss the results. I explained my situation and asked if the doctor could get on the phone for 5 minutes and I could discuss the treatment plan my other doctor suggested. The following day the assistant called me back and said I have to come in to see the doctor and that she wouldn’t be giving me advice over the phone.

Now which doctor do you think I’m going to continue to see? In this situation, it’s really cut and dry, but many situations aren’t as clear. The article stated there are 5 common signs that suggest you need to change your doctor. They are:

The doctor. doesn’t tailor recommendations to your life

The doctor is always running late

The doctor rushes you

The office is disorganized

The doctor is arrogant

So from now on, I will periodically reevaluate my satisfaction with the doctors I see (and unfortunately there are many). If I don’t feel as if I’m working as a team with my doctor and that we are not partners in this important relationship, I will look for another doctor.

It’s easier to find a doctor these days, then it is a potential mate, so why suffer with either relationship when you know in your heart it’s time to move on.

As I walked home I saw a woman walking quickly ahead of me and then I noticed something fell out of her pocket. I called for her, but she didn’t hear me and her pace was quickening so I couldn’t catch up to her. I bent down to pick up the paper and it was a letter addressed to her boyfriend:

“Honey, I have so many mixed emotions and feelings when I think of you and I. Yesterday was such a pleasant afternoon and the person that I fell in love with was present, but lately I haven’t seen much of that person. I talk about you sometimes as if you are 2 people, because that’s what it seems to me. There’s the sweet guy with a heart bigger than anyone I’ve every met, but there’s also the angry, negative one that sucks the life out of you and who has hurt me more times than I care to remember. I’ve come to realize that promises of “your heart” are fleeting because you are such an emotional being and this emotion makes you act irrational at times.”

The rest of the letter must still be in her pocket as it just ended abruptly, or had she decided not to continue writing the letter. I guess I will never know, but I think about that girl and the emotional pain she was feeling that afternoon.